Caregiving & Arthritis
Take care of yourself: It’s advice you’ve probably heard countless times from medical professionals, friends and family members who know you have arthritis. If you’re a caregiver to another adult who’s disabled or ill, however, meeting your own needs in addition to those of the person you’re caring
Parenting With Arthritis
Don't let pain take the enjoyment out of parenting.
Parenting is a tough job – even for a healthy person! Parenting means that you have to be available to your children in some way, 24 hours a day, seven days a week. A disease such as arthritis can make the parenting adventure even more difficult – and painful. Use these strategies to help you remain involved in your children’s lives while remaining as pain free as possible.
Remain involved. When you have arthritis, you may not be able to handle a one-on-one game of basketball, but spending leisure time with your children is an important way to bond. As a parent with arthritis, adapt activities to your needs: play a board game, take a walk or go to the movies with your child.
Be honest but reassuring about your illness. “Hiding it creates a sense of shame,” says Mark Lumley, PhD, a clinical psychologist and professor of health psychology at Wayne State University, Detroit, Mich. “What’s more important is to show how you cope with it by reaching out for support and medicating wisely. Kids learn about dealing with illness in a positive way.”
Stay in charge. Good parenting has nothing to do with physical health. “You can still be a heck of a good parent even if you’re struggling with pain,” Lumley says. “Good parents communicate, counsel, teach and discipline their children.”
Prioritize your life. Focus on what really matters to you – and delegate or lose the rest. “Save your energy for what you can do,” says Ruth Hall, 51, who has rheumatoid arthritis, osteoarthritis and fibromyalgia. “If I had been told to pace myself in the very beginning, life would have been better for all.”
Stay positive. When you have arthritis, attitude is the most important factor in maintaining a healthy relationship with your children. “If you become defeated by arthritis, your children will feel defeated as well,” says Annmarie Cano, PhD, a clinical psychologist at Wayne State University.
Solutions for Nine Common Caregiving Challenges
Being a good caregiver means you first must take good care of yourself and your arthritis.
By Camille Noe Pagán
Take care of yourself: It’s advice you’ve probably heard countless times from medical professionals, friends and family members who know you have arthritis. If you’re a caregiver to another adult who’s disabled or ill, however, meeting your own needs in addition to those of the person you’re caring for can be a challenge.
In fact, a survey from Caring.com, a website that provides resources to caregivers, queried more than 1,000 caregivers and found that caregiving was their single biggest source of stress – even more so than their financial concerns and other family medical problems – and that their physical and emotional health often suffered as a result. “It’s all too common to attend to the needs of the person you’re caring for before your own, even if you have a chronic disease like arthritis, not realizing that you can’t be fully effective if you neglect your health,” says Marion Somers, PhD, who owned and directed a geriatric-care management service in Brooklyn, N.Y., for more than 30 years.
Here, she and other authorities on caregiving offer practical solutions to nine common challenges – physical, emotional and even financial – so that you can keep up the good work without being worn down.
1. Challenge: “I’m completely exhausted.” According to an AARP survey, the average caregiver is a woman in her late 40s who cares for an aging parent, as well as her own nuclear family – and works outside the home, too. Add to that hectic schedule a condition such as rheumatoid arthritis (RA) or fibromyalgia, which often causes physical fatigue, and it’s a miracle you’re not sleeping in your soup!
Solution: Go for natural energy boosters. A good night’s sleep should top your list. To make it easier, skip the late-night TV, drop your bedroom temperature and make the room as dark as possible. Make healthy eating another priority; packaged, convenient foods often cause a blood sugar spike that ultimately depletes your energy. And set aside a few minutes each day for exercise. A University of Georgia study of nearly 7,000 people, published in Psychological Bulletin, revealed that just 10 to 15 minutes of daily exercise – even just low-intensity walking – significantly reduced fatigue in individuals with health problems, including arthritis. “If you’re [reluctant to] take time away from caregiving duties, realize that, as a person with arthritis, exercise should be a non-negotiable part of your Rx,” says Robinson.
If feelings of exhaustion don’t ease up, see your doctor. “Fatigue can be a sign that your disease is not actively controlled,” says Chaim Putterman, MD, chief of the division of rheumatology at Albert Einstein College of Medicine in the Bronx, N.Y.
2. Challenge: “I’m overwhelmed by how much there is to do.” The Caring.com survey found that 58 percent of caregivers spend more than 10 hours a week providing services including shopping, talking with doctors and administering medications; 22 percent spend upwards of 40 hours weekly on those kinds of tasks. “When you’re a caregiver, your day-to-day duties are literally doubled, and that can feel overwhelming, no matter how organized and capable you may be,” says Somers.
Solution: Focus on what’s truly important, and be up-front about your limitations. Talk to the person you are caring for about your disease and physical limitations so he understands what you can and can’t do, adds Dr. Putterman. And although it might be tempting to tackle the easiest tasks first, it’s smarter to identify and do what absolutely must get done before you run out of steam, he says. “When you have an autoimmune disease, you don’t have unlimited resources, so you shouldn’t try to accomplish every single thing,” he says. Having trouble prioritizing? Consider consulting a health advocate who specializes in caregiving. Many hospitals, community organizations and local government offices provide free advocacy services, or check the National Association of Healthcare Advocacy Consultants’ directory to find a professional.
3. Challenge: “Seeing my loved one this way makes me sad.” The Centers for Disease Control and Prevention (CDC) estimates that 9 percent of Americans have depression, but that number skyrockets to 20 to 50 percent among caregivers. Arthritis may pose an additional risk: At least one study, published in Arthritis Care and Research, suggests that up to 42 percent of individuals with rheumatoid arthritis (RA) will experience depression at some point in their lives.
Solution: Give yourself some downtime, and focus on the positive. It’s crucial to give your brain and body a chance to recharge. “Even stealing five minutes to put on music in the car or call a friend when you’re out getting groceries is better than nothing,” says Somers.
It’s natural to be saddened by a difficult situation, but making a conscious choice to find the positive can do your heart and mind a world of good. “When I cared for my own mother, I found many wonderful aspects to the experience,” says Karen Robinson, PhD, executive director of the volunteer caregivers program at the University of Louisville School of Nursing in Kentucky. Among these wonderful aspects: the simple joy of knowing she was doing all she could for someone she loved.
But even the most positive person may not be able to prevent a caregiving situation from taking a heavy mental toll. If you’ve been feeling blue for more than two weeks, talk to your doctor; you may have clinical depression, which should be treated.
4. Challenge: “It’s hard to always be the bearer of bad news.” Many caregivers serve as the information pipeline to family and friends, as well as having to convey or re-state health information to the person for whom they’re caring. “Having to deliver bad news creates an unnecessary layer of stress,” says James Huysman, a licensed clinical social worker, editor of Today’s Caregiver magazine and founder of LeezasPlace.org, a network for caregivers.
Solution: Pick another point person. “Ninety-nine percent of the time, you shouldn’t be the messenger. For example, if your father can’t drive anymore, the doctor or optometrist should tell him,” says Huysman. Rather than serving as the central information hub for your family, ask that another relative be the point person or hire a health advocate, eldercare mediator, social worker or geriatric care manager to help manage affairs and disseminate information.
5. Challenge: “My joints and muscles hurt more now that I am a caregiver.” Caregiving can involve physically demanding tasks, such as helping a disabled person sit or stand, or supporting him as he walks. Even if you don’t do this kind of heavy lifting, you’re probably on your feet more – running up and down stairs more often or otherwise being more active. Plus, stress can increase inflammation, which worsens arthritis pain and stiffness.
Solution: Get more help from the person you’re caring for. Have her do as much as she’s able, even if she can’t do it perfectly or it takes three times as long. “Many people think it’s best to do everything for the person they’re helping when in fact the opposite is true. Not allowing them to do for themselves creates what’s called ‘excess disability,’ because it decreases their abilities and self-esteem faster than normal,” explains Robinson.
When you’re doing physical tasks, such as lifting or carrying, make sure to engage your large muscles (think biceps and quads) to help take the strain off your joints. Carrying a bucket of water from the kitchen sink to the living room floor? Hold the handle with one hand, and put your other arm beneath the bucket to support the weight.
6. Challenge: “I take on tasks that probably aren’t safe for me.” Hospitals and other care facilities have able-bodied aides who handle heavy and difficult tasks, such as bathing an individual who can’t stand on her own. Yet, caregivers may attempt these and many other duties alone because they feel that if they don’t, no one will.
Solutions: Get a reality check about your limits. Create a list of the caregiving tasks you do, and run them by your physician. “Many caregivers may not realize just how dangerous some of the things the they do really are,” says Huysman. Ask an able-bodied family member or hire a home health aide to help with these tasks.
And remember, says Huysman, “Caregiving doesn’t have to be [only] about chores and tasks. If you're hurting, stop what you’re doing, and sit and talk to the person you’re caring for, or read to them. Offering emotional support is just as important as physical help.”
7. Challenge: “I spend a lot of money on the person I care for.” Nearly half of caregivers spend more than $5,000 of their own money each year caring for a loved one, according to the Caring.com survey. One-third see their work situation negatively affected – for example, having to retire early or work less. “You may have less money for healthful food, supplements, gym shoes or medications for yourself, and you may even be jeopardizing your future financial stability,” says Somers.
Solution: Keep finances separate. If you can’t, document expenses. “Don’t use your own cash, [debit] card or credit card for caregiving errands, such as picking up prescriptions, thinking you’ll get reimbursed later. It’s too easy to lose track,” says Somers. Instead, if the person you’re caring for has a source of income, such as a pension or Social Security payment, use that money first. If you must use your own money, keep track by recording items and their costs. “A written record is also useful when asking other family members, such as siblings, to share the [financial] responsibilities you’ve taken on,” Somers says.
8. Challenge: “I feel cut off from the rest of the world.” Taking care of someone with limited mobility can make it difficult for a caregiver to leave the house for anything more than work or errands – and that can undermine a caregiver’s well-being. “Social isolation is cancer of the caregiver’s soul,” says Huysman. It takes a physical toll, too. Studies from Harvard University, the University of Chicago and other institutions show that individuals who don’t maintain strong social networks are at a higher risk for health problems and mortality from all causes.
Solution: Make social activities a priority. Get out of the house at least once a day – even if it's just to walk to the corner store. “Ask friends, neighbors or family members, ‘Can you come over for 15 minutes while I get some fresh air?’ People want to help, and they’re more willing to do so when it’s a concrete task for a set amount of time,” says Somers.
Seek out others in similar situations. Huysman recommends joining an in-person or online support group for caregivers: visit caregiver.com, caregiver.org or sharethecare.org. “Even if you’re not a joiner, you’ll be surprised by how uplifting it is to talk to people in a similar situation,” he says. A clergy member, psychologist or social worker might also help, says Robinson. Many counseling professionals work on a sliding scale, and some community organizations offer counseling services to caregivers for free.
9. Challenge: “I feel burned out.” From the emotional stress of seeing a loved one in need of constant care to the additional chores and financial worries, caregiving brings major stressors.That may explain why one Dutch study, published in the journal Disability and Rehabilitation, found that more than 25 percent of caregivers feel an immense burden – akin to what experts describe as “burnout.”
Solution: Share the load. “Arthritis or no arthritis, it is simply impossible for one person to do all the caregiving,” says Somers. Make a list of your caregiving duties. Then delegate as many as possible. “Can someone else help with bookkeeping or take grandma to church? Don’t feel guilty about doing less – you’ll be a better caregiver because of it,” she says.
A caregiving journal also can help, she adds. “When you’re caring for another person with a disability or health issue, it’s almost impossible to remember everything, and that can be stressful,” says Somers. She advises keeping a small notebook with you at all times so you can jot down information on the go. “That way, you have a reference and you can share it with other family members who need to know what’s going on.”
Guidelines for Children Who are Caregivers
Follow these suggestions to make sure children taking care of parents don't become overwhelmed.
A report published by the National Alliance of Caregiving titled “Young Caregivers in the U.S.,” found that the number of child caregivers was more than the total number of kids in grades 3 – 12 in New York City, Chicago and Washington D.C. combined. With over 1.3 million children being caregivers to a parent or grandparent, it is of vital importance to the well-being of these child caregivers that they are treated as children and not as adults. Use these guidelines to help parent a child caregiver and learn some ways to keep these children from feeling overwhelmed by their responsibilities.
Keep things “normal.” Make sure children caregivers have opportunities to enjoy “regular kid” fun as often as possible. “Children need time to be children,”
says Helen Land, PhD, a professor of social work at the University of Southern California’s School of Social Work, Los Angeles, who has studied caregiving relationships. “They need to have experiences outside
Watch for signs of stress. If your child has frequent headaches or backaches, inability to sleep or eat, or stomach upset, it could be a sign that her burden is too heavy, says Land. Develop a support network. Having other adults to rely on can help ease the burden on your children.
Consider their duties a standard chore. “All family members contribute to the running of the household, so children can also be educated that household chores are not something they do because mommy or daddy has pain, they’re things family members do for each other,” says Land.
Don’t feel guilty about asking for help. Your children may be more willing to pitch in than you would predict.
Choose your child’s tasks wisely. Give them age-appropriate chores – and watch out for signs that they’re uncomfortable taking on a certain role. “Think about how it will make the kid feel to do it,” advises 17-year-old Matthew Beach, whose mother, Annette Beach, has rheumatoid arthritis. "I'd have to put my mother’s hair in a ponytail for her in front of my friends, and it was kind of embarrassing.”
How to Hire the Right Caregiver
Know the dos and don’ts when getting help at home.
By Camille Noe Pagán
Whether you need help for yourself or an aging parent, in-home care can lighten your physical and psychological load. But because a home-care aid will be in your private space, and may assist with intimate aspects of everyday life, “you’ll want to do everything you can to ensure you choose the right person,” says Karen A. Roberto, PhD, director of the Center for Gerontology at Virginia Tech in Blacksburg. Some key tips to keep in mind:
DO assess your needs and write a detailed job description. Compose a list of all the tasks you need help with – including medical and grooming needs, housework help, grocery shopping and transportation assistance – and the hours and days of the week care is needed. This will help attract the right applicants.
DO thorough interviews with several candidates. You’ll up the odds of finding the right arrangement, says Roberto. “If you’re going through an agency, find out how long they’ve been in business, what kind of oversight and training they provide for caregivers, and how they facilitate communication between the caregiver and caregivee,” says Roberto. “If they’re licensed by the state and/or certified by Medicare or other governing agency, request the results of the most recent survey or review.” Considering an independent contractor (who often refer to themselves as home health aides)? Ask about their credentials and experiences, as well as what they charge for services and how they handle a payment schedule.
DON’T forget to check references. “Ask for multiple references and letters of recommendation – and check every one, even if you’re using an agency and they say they’ve already vetted the individual,” says elder care specialist Marion Somers, PhD, and author of Elder Care Made Easier (Addicus Books, 2006). Similarly, make sure you have a copy of the caregiver’s driver’s license and social security card on file.
DO get everything in writing. Make a list of daily tasks as well as occasional duties – like purchasing groceries or helping with doctor’s trips – and be sure the aide is comfortable with each and has performed it in the past (or if not, is willing to undergo training), advises Roberto. A written contract is also smart. “It doesn’t have to be long, complicated or drawn up by a lawyer,” says Somers. “But it should detail an average month’s work as well as payment terms, so that you’re on the same page about the job.”
DON’T be afraid to find someone else. “It’s wise to consider a one-month trial before extending a formal offer; that makes it easier to let someone go if it’s not working out,” says Somers. Above all, “trust your gut,” she urges. “If your needs aren’t being met or you feel uncomfortable in your home, it’s time to look for someone new.”